Sickle cell disease (SCD) has a negative impact on academic and job functioning. Recurrent acute vaso-occlusive crises and organ dysfunction related to SCD can limit employment options and interfere with job retention. Potential associates of unemployment and poor job performance in adults with SCD include health-related (pain frequency and intensity, health-care utilization) and psychosocial (support system, coping mechanism). Moreover, poor academic achievement may increase the rates of unemployment in this patient group. The goal of this study is to compare patients’ rates of unemployment and disability with those of their unaffected siblings.
Twenty adult SCD patients (16 hemoglobin SS and 4 hemoglobin SC ; age: median = 29, range 20-56 years; sex: 8 males, 12 females) completed questionnaires relating to occupational experiences. Questionnaires were administered during routine clinic visits. Questions on the questionnaires relate to demographics, chronic pain scale, health-care utilization, use of hydroxyurea, employment status, length of employment, annual income, job satisfaction and use of tobacco, alcohol, or illicit drugs. These questionnaires also included questions relating to patients unaffected siblings who are within 5 years of age difference. We also performed paper and electronic chart review to obtain each patient’s health related data including number of days in the hospital for acute illnesses and for routine clinic appointments in the previous year, number of pain medications, other chronic medical conditions and SCD-related laboratory and tests results. Fourteen out of twenty patients (70%) were on hydroxyurea therapy and 14/20 (70%) had 3 or more hospitalizations in the previous one year. Patients on chronic transfusion therapy and those with other disabling conditions unrelated to SCD were excluded.
Four out of twenty SCD patients (20%) are currently employed as compared to 15/20 (75%) of their healthy siblings (p < .001, all tests reported are Fisher’s Exact Test). Two of the SCD patients have been employed for more than 2 years as compared to 11 of their siblings (p = .006). Fourteen of SCD patients are on disability, while this is true for only one of the siblings (p < .001). Four of the twenty SCD patients are college graduates compared with 6 of the 20 unaffected siblings (p = .36). It is interesting to note that 12 out of 14 (86%) SCD patients who are currently on disability have previously had a job. Five of the fourteen (36%) SCD patients on disability reported that they missed more than 3 days per week of work due to their SCD. Of the unemployed patients, fourteen out of 16 (88%) wished they had a job.
This study highlights the negative impact of sickle cell disease on adult patients’ employment rates and job retention. Even though 16/20 (80%) of the SCD patients have previously had a job, only 20% are currently employed. Extension of this study will focus on development of specific interventions that may improve accommodation of SCD patients by encouraging collaboration between patients, families, medical providers, and employers. We believe that this is necessary in order to provide the most favorable environment for these patients to have better job functioning and it will also result in less economic burden on the society.
No relevant conflicts of interest to declare.
Asterisk with author names denotes non-ASH members.